Stranger Than Family: Decision-Making and Ethics of Substitution for People Living with Dementia Going it Alone
This research focuses on how ideas of capacity, consent, and decision-making affect people facing dementia who are “going it alone” and non-family, non-friend others who become involved in representing them as substitute decision-makers.
While it is often assumed that a family member will be present to advocate and provide care for a person living with dementia, and to act as a substitute decision-maker, not every person facing dementia has a close family member or friend to turn to. There is little research into how “relative strangers” become supportive or substitute decision-makers for people living with dementia “going it alone” and the ways that representation is sought, secured, and carried out. How are people who are facing dementia alone imagining a future where they need help with personal care and finances, and what are their considerations and challenges in securing representation from a non-family, non-friend decision-maker? How do professionals involved in securing representation, and non-family, non-friend others who become decision-makers, understand and interpret their roles? Examining a critical intersection in health, law, and ethics, this research pursues these questions. It is funded by the Alzheimer Society Research Program.
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Reorienting Response: An Ethnography of Old Age, Disability, and Queer Lives in Canada
This research examined the social dynamics and norms shaping the lives and care experiences among LGBTQ older adults living in long-term care homes and non-institutional setting in Toronto, Canada.
Based on 16 months of ethnographic fieldwork, and upwards of 100 interviews with LGBTQ older adults, care workers, community advocates, attorneys for care, and others, this research examined a critical nexus of queer and trans aging, disability, and “care”. The research explored key issues of: consent & capacity; senility, dementia, and gender nonconformity; voice and articulation; proximity and queer desire in institutional care; and death and dying. Engaging with scholarly discourse and contemporary public debates the dissertation argues for a reorientation towards “response”: as a way of skirting the overdeterminations of care, attending to action in everyday life, and examining and questioning ableist norms of responsiveness and articulation. This research was supported by a Social Science and Humanities Research Council (SSHRC) Doctoral Award, and other financial support including from the University of Toronto Department of Anthropology.
Coming Out and Coming in to Living with Dementia: Enhancing Support for 2SLGBTQI People Living with Dementia and Their Primary Unpaid Carers
In my role as a researcher at Egale, I co-led a national study focused on dementia and unpaid caring among 2SLGBTQI people in Canada. Together with Dr. Ashley Flanagan from the National Institute on Ageing, we conducted focus groups, interviews, and a consultation event focused on better understanding community experiences and needs. The final report highlights key findings and recommendations from this original research. Listen to a presentation about the research here.
These findings informed the creation of a set of open-access educational modules geared towards healthcare and social service providers and the general public.
Select ongoing research and collaborations
Fostering Dialogues Among 2SLGBTQI Older Adults and Homecare Workers: An Arts-Based Action Research Project brings together 2SLGBTQI older adults and personal support homecare workers to explore questions of home, care, and futures of community-based care through arts and dialogue.
Action Through Connection: Promoting LBQ Health in Canada aims to learn more about the health and healthcare access concerns for women, trans, and nonbinary people who are lesbian, bi+, or queer (or resonate with these experiences) in Canada, and to identify priorities for intersectoral action.
I am an active member of the Association for Anthropology, Gerontology and the Life Course, and have served on the planning committees of the last two international conferences, AAGE 2020: Aging and Social Justice and AAGE 2022: Creativity and Aging.
Select past research and collaborations
The National Resource Centre on 2SLGBTQI Aging, a collaboration between Egale Canada and the National Institute on Ageing, is a resource centre focused on the lived experiences of 2SLGBTQI older adults and aging issues in Canada. The site is a storehouse of information, research and resources for 2SLGBTQI older adults, their communities, and for those who provide social service and care to these groups.
At the University of Toronto Scarborough I helped to establish a new Centre for Global Disability Studies, with inaugural director Dr. Cassandra Hartblay and colleague Elaine Cagulada. Launched in 2020, the Centre serves as a catalyst to bring together critical disability scholars and support transdisciplinary, transnational, and anticolonial approaches.
In 2022 the Canadian Network for the Prevention of Elder Abuse (CNPEA) launched Future Us: A Roadmap to Elder Abuse Prevention. As a core committee member I brought an equity-focused lens, and participated in authoring the strategy.
Leading & Learning with Pride: A Revitalized Tool Kit on Supporting 2SLGBTQI+ Seniors, for which I was an expert reviewer, is a City of Toronto toolkit focused on principles and strategies to build individual and organizational capacity to better support 2SLGBTQI+ seniors in care settings.
Bringing qualitative research experience and a critical lens, I have collaborated in multi-disciplinary hospital-based research that aims to improve person-centered care. This includes research focused on perceptions of palliative care, ideas of independence and interdependence in post-surgical homecare, and the potential for patient engagement in medical trainee selection.